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“DBS therapy gives me more time to do things that are important to me”

John Alexander

Parkinson’s won’t shake John

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sponsored by Abbott

Author: SponsoredPublished: 24 April 2018

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John Alexander was diagnosed with Parkinson’s in 2010, but was determined to forge a new path. Thanks to successful deep brain stimulation therapy, he hasn’t looked back

An avid long-distance cyclist, triathlon competitor, and author, you’d never guess John Alexander is living with Parkinson’s disease. Diagnosed in 2010, the news came as a surprise to the athlete, father and grandfather: there was no family history of the disease. According to John: “No one knew how it was going to play out and progress.”

Working closely with his neurologist, John followed a medication-based treatment plan for more than six years to manage his symptoms. But by the autumn of 2016, he began to worry about the volume of medication he was taking – and his symptoms were only getting worse. John found it increasingly difficult to remove his keys from his pocket, open doors, or carry a glass of water. Getting dressed each morning became an arduous task. He could no longer read his own handwriting and had to avoid ordering certain foods that required too much concentration or fine motor skill to eat.

This was the moment that John decided enough was enough. He wanted to map out a different care path, and with the help of his neurologist, Dr. Kelly Foote – a movement disorder specialist at the University of Florida Health Center for Movement Disorders and Neurorestoration in Gainesville, Florida, US – he decided to explore non-pharmaceutical options. John enquired about deep brain stimulation (DBS), a therapy he’d learned about from a Parkinson’s advocate who found relief through its use.

DBS is a treatment option that provides personalised, clinically-proven control of Parkinson’s disease symptoms. Since its introduction in 1990, DBS therapy has helped over 120,000 people worldwide.1 The technology uses an implanted device, similar to a pacemaker, to send stimulation signals to areas in the brain that cause involuntary movements. In a study of people with Parkinson’s disease, those who received DBS therapy versus other medical therapy experienced increased good quality “on-time,” decreased “off-times,” the ability to reduce medication, and a sustained improvement in their quality of life.2

Based on his history and overall health, Dr. Foote agreed that John could be a viable DBS candidate and pursued an intense assessment, concluding that John should undergo the Abbott Infinity DBS procedure. He recommended implanting the Infinity DBS system because it uses directional lead technology – a major technological advance that allows for more precise targeting with stimulation currents. As an added benefit, the Abbott DBS therapy is the only one that uses a wireless iOS device (an Apple iPod) to control stimulation, allowing the patient to receive discreet, personalised treatment in the palm of their hand.

With renewed hope for the possibility of controlling the impact of his symptoms, John underwent the surgery in October 2016.

Relief of his symptoms—tremor and rigidity—came swiftly. John says the difference is so profound that observers can tell within seconds when he uses his iPod controller to briefly turn the therapy off. “There is a dramatic difference in the level of control of my tremor when the device is turned on and working,” he says.

Since the surgery, John has been able to cut his medications by half, his pain has lessened and he feels more comfortable in social settings. “The results from my DBS surgery were dramatic,” he says. “I was elated. I was so glad not to have some of the challenges.”

That hasn’t stopped John from challenging himself, however. In less than two years since his surgery, John has ridden more than 3,000 miles on his bike, completed the University of Florida Super Sprint Triathlon – not once, but twice – and even climbed a mountain in Scotland, UK. He is also an active Parkinson’s advocate, serving as an Ambassador for the Davis Phinney Foundation and a board member of the Parkinson’s Association of Central Florida, US, and has attended the 4th Annual World Parkinson’s Congress in Portland, Oregon, US.

“I have time to do things that are really important to me – and help other people with the condition realise that they can still live a very full life while having Parkinson’s disease,” says John.

John hasn’t allowed Parkinson’s to keep him from the activities he enjoys, including spending time with his two children and three grandchildren. But now, thanks to successful DBS therapy, he has the renewed strength and energy to pursue his passions. DBS therapy “gives me a sense of calm,” John says. “It gives me more time to do things that are really important to me.”

There is no cure for Parkinson’s disease (PD), but there are options available to treat symptoms. The first-line therapy is medication. Surgical treatments are also available. It’s important to discuss with your doctor what’s right for you along with the risks and side effects of each option, such as motor fluctuations or permanent neurological impairment.

As with any surgery or therapy, deep brain stimulation has risks and complications. Most side effects of DBS surgery are temporary and correct themselves over time. Some people may experience lasting, stroke-like symptoms, such as weakness, numbness, problems with vision or slurred speech. In the event that the side effects are intolerable or you are not satisfied with the therapy, the DBS system can be turned off or surgically removed.

Risks of brain surgery include serious complications such as coma, bleeding inside the brain, paralysis, seizures and infection. Some of these may be fatal.

For further information on deep brain stimulation please visit the European Parkinson’s Disease Association website.

This story reflects one person’s experience; not everyone will experience the same results. Talk to your doctor about the benefits and risks of your treatment options. Abbott does not provide medical services or advice as part of this website.

This article is sponsored by Abbott. The information in this article is given for information purposes only and does not represent an endorsement by the EPDA of any particular treatments, products or companies. This article is not a substitute for advice from your doctor, pharmacist or other healthcare professional. Parkinson’s Life makes no representations or warranties of any kind, express or implied, about the completeness or accuracy of information provided.

IN THE NEWS

A study published in the ‘Journal of Clinical Investigation’ has suggested mechanisms that lead to Parkinson’s in adulthood, may begin much earlier than previously thought. The study, carried out by Northwestern University, Illinois, US, researched movement disorder spinocerebellar ataxia type 1 by genetically engineering a mouse to mirror the human disease. Researchers found that altering circuity in the cerebellum – an area of the brain that controls movements – set the stage for later susceptibility to neurological disease. Professor Puneet Opal, who worked on the study, said: “This is the first discovery of alterations in an adult-onset spinocerebellar disorder that stems from such early developmental processes. “This may well be generalisable to a whole host of other diseases, including Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and amyotrophic lateral sclerosis.”

Global Kinetics receives vital funding

Australian-based health company Global Kinetics has received a $AUS 7.75 million investment from the Australian Federal Government’s Biomedical Translation Fund. The investment will be used to commercialise its Parkinson’s KinetiGraph – a smartwatch-style device that continually tracks the involuntary movements of those living with the condition. In addition to the sum from the Australian government, Global Kinetics also announced they are to receive a grant from The Michael J Fox Foundation, Shake It Up Australia Foundation and Parkinson’s Victoria. Mark Frasier, senior vice president of research programmes at The Michael J Fox Foundation, said: “The experience of Parkinson’s varies day-to-day, hour-to-hour. An objective tool, such as the wearable PKG technology, that passively collects data on the experience of Parkinson’s disease could give patients and their doctors greater insight to calibrate treatment plans and improve outcomes.”

Smartphone app detects severity of Parkinson’s symptoms

A smartphone app– created by researchers from Johns Hopkins University, the University of Rochester Medical Centre and Aston University – can detect the severity of symptoms in people with Parkinson’s, according to a recent study. The study, which appeared in medical journal ‘JAMA’, found that the HopkinsPD app generated severity score levels which strongly correlated with standard movement tests given by physicians. HopkinsPD is expected to help medical professionals analyse Parkinson’s symptoms. Dr Ray Dorsey, neurologist at the University of Rochester, said: “Until these types of studies, we had very limited data on how people function on Saturdays and Sundays because patients don’t come to the clinic. “We also had very limited data about how people with Parkinson’s do at two o’clock in the morning or 11 o’clock at night because, unless they’re hospitalised, they’re generally not being seen in clinics at those times.”